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Expert opinion varies, and high-quality evidence on how best to discuss these issues with such patients and their caregivers is limited. These guidelines were developed to address these issues.
The guidelines were developed through the following methods: Systematic literature review of the best available evidence on discussion of prognosis and end-of-life issues; Review of previous relevant guidelines and expert opinions in the literature; and Refining of draft guidelines by an expert advisory panel.
Prepare for the discussion, where possible: Confirm pathological diagnosis and investigation results before initiating discussion.
Try to ensure privacy and uninterrupted time for discussion. Negotiate who should be present during the discussion.
Relate to the person: Show empathy, care and compassion during the entire consultation. Elicit patient and caregiver preferences: Consider cultural and contextual factors influencing information preferences. Provide information, tailored to the individual needs of both patients and their families: Offer to discuss what to expect, in a sensitive manner, giving the patient the option not to discuss it.
Use clear, jargon-free, understandable language. Explain the uncertainty, limitations and unreliability of prognostic and end-of-life information. Avoid being too exact with timeframes unless in the last few days.
Try to ensure consistency of information and approach provided to different family members and the patient and from different clinical team members. Acknowledge emotions and concerns: Be honest without being blunt or giving more detailed information than desired by the patient. Reassure that support, treatments and resources are available to control pain and other symptoms, but avoid premature reassurance.
Explore and facilitate realistic goals and wishes, and ways of coping on a day-to-day basis, where appropriate. Encourage questions and further discussions: Encourage questions and information clarification; be prepared to repeat explanations.
Leave the door open for topics to be discussed again in the future.
Write a summary of what has been discussed in the medical record. Guideline development and use Discussing prognosis and end-of-life issues has been identified as an important component of care by patients with progressive life-limiting illnesses, and their families.
Clinicians need to provide information in a way that assists patients and their families to make appropriate decisions, be informed to the level that they wish, and cope with their situation.
These guidelines have been prepared to assist clinicians with this difficult but important task. Methods of guideline development The guidelines were developed using the following process: Refining of guidelines with an expert advisory panel.
Literature review Systematic review The systematic review 3 was conducted in conjunction with personnel of the systematic review section of the National Health and Medical Research Council NHMRC Clinical Trials Centre, in accordance with the principles and processes recommended by the Cochrane Review.
More specifically for studies where patients formed the study group, the eligibility criteria included: Individual reviewers extracted data from each study using a standard format. Review of consensus guidelines and expert opinion Relevant consensus guidelines and expert opinion were incorporated into the guidelines because of the lack of evidence for some topics.
Consensus guidelines in similar areas were retrieved via hand searching and the search strategy for the systematic review. They were excluded from the systematic review because they were not studies. These guidelines used a rigorous consensus-building process, with many commissioned by the Australian or New South Wales Government and endorsed by national peak bodies.
The panel members were selected to reflect the multidisciplinary nature of care for patients with advanced progressive life-limiting illnesses. Representatives were selected on the basis of either their clinical expertise or a track record of publications on this topic.
This group was sent the guidelines by mail and asked to evaluate them both by rating each individual point using a nominal scale and by providing suggested word changes and comments following critical review.The Americans With Disabilities Act: Applying Performance And Conduct Standards To Employees With Disabilities.
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